Close to half of teenagers and young adults who are infected with the HIV virus do not seek treatment until their disease has advanced, says a new study by Johns Hopkins Medicine. The delay puts these youth at risk for long-term complications and dangerous infections.

Researchers say that they are troubled by the findings, which were published in the Feb. 3, 2014, issue of "JAMA Pediatrics." There is growing evidence that starting treatment for HIV as soon as possible can keep the virus in check and prevent neurological, renal, and cardiovascular damage.

The researchers did not determine why patients went to clinics with advanced infections, but believe that some youth were not aware that they had HIV, while others were diagnosed but did not seek treatment.

An advanced stage was defined as having less than 350 CD4 cells per cubic millimeter of blood. These cells protect the immune system against infection. HIV targets these cells and either depletes or destroys them. The weakened immune system is vulnerable to viral, bacterial, and fungal organisms that do not harm a healthy person, but can lead to severe life-threatening infections in people with the HIV virus.

A healthy person has 500 to 1,500 CD4 cells per cubic millimeter. HIV-infected people with CD counts below 500 require anto-retroviral therapy to control the virus and stop it from multiplying. People with CD4 cell counts below 200 have full-blown AIDS.

“These are decidedly disappointing findings that underscore the need to develop better ways to diagnose teens sooner and, just as importantly, to get them into care and on therapy sooner,” says lead investigator Allison Agwu, M.D., an infectious disease specialist and HIV expert at the Johns Hopkins Children’s Center.

The U.S. Centers for Disease Control and Prevention recommend that people ages 13 to 64 be tested for HIV, but many do not because they are unwilling to get tested, are afraid, fear stigma, or face the biases of clinicians.

“Clinicians need to get away from their own preconceived notions about who gets infected, stop risk-profiling patients and test across the board,” Agwu says. Agwu urges pediatricans to help youth see HIV testing as part of their regular physical.

Investigators wrote that they have grave concerns that patients with lower CD4 cell counts tended to have more active virus circulating in their blood and bodily fluids, which makes them more likely to spread the infection to others. “We have to become more creative in linking those already diagnosed with services so they are not deteriorating out there and infecting others,” Agwu says.

Study findings:

Males and members of ethnic and racial minorities were more likely than others to see care at more advanced stages

Black youth were more than twice as likely as their white peers to show up in clinics at the more advanced stages

Hispanic youth were 1.7 times more likely as their peers to show up in clinics at the more advanced stages

Males were more likely than females to show up in clinics with lower CD4 cell counts

Males as a whole were at a higher risk for putting off treatment because they tend to receive less regular care than females, who are more likely to be tested during annual OB/GYN exams and treated sooner

Males who became HIV inflected through heterosexual sex tended to seek treatment at more advanced disease stages than homosexual males

“In our study, heterosexual males emerged as this fall-through-the-cracks group,” Agwu says. “We’ve put a lot of emphasis on men who have sex with men in our screening and outreach, but one side effect of this may be that straight males perceive themselves as low risk.”

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